Syringo Myelia and Arnold's Chiari - Spinal Cord Disorders Message Board

yogididdy · 01-23-2003, 11:36 PM

In March of 2001, I was diagnosed with Arnold's Chiari. A birth defect when the 2 prongs on the cerebellum grow on top of the spinal cord. Normally there is a gap in between the prongs and the spinal cord. During the first surgery, they chipped away part of my 1st vertabrae to give more room so a gap could grow. The surgery was successful.

Then, in Decemeber of 2001, I started getting pains in my neck and my arms. My right hand would go numb as would other various parts of my body. I had a MRI which showed a syrinx growth in the top portion of my spinal cord. The syrinx was full of spinal fluid that was trapped due to the cerebellum prongs growing on my spinal cord. The fluid that was trapped, would erode my spinal cord, causing my nerves to be pushed closer to the skin's surface. My neurosurgeon stated that they could do another surgery and put a shunt in the syrinx to drain the fluid. He said that the syrinx would never shrink and go away, but it would be quite a bit smaller and would help stop any new numbness.

In February of 2002, I had the surgery and it was posted as a success. It has been almost a year and I stil have pains in my right side of my back, right side back of neck, and right arm and hand. Three finger tips on my right hand (index, thumb and middle) have and will always be numb due to the nerve damage. The pain in my neck and back, 6-9 months after surgery was diagnosed as muscles and nerves growing back. It has been 11 months, just a few weeks short of a year, and I still have this unbelievable pains in my back, neck and arm. The doctors have stated that some of the pain that I will get, can be related to the pains that someone with arthritis gets.

I was wondering if anyone else has had these surgeries and could relate to anything that I have been having.

The most recent symptom is, a very sharp pin pointed pain in my mid-right back and travels down above the right buttock. The pain can cause me to stay in bed for a day as it hurts to walk. Also, the weather changes can cause the same, staying bed because it hurts to walk.

I am 25 years old and was told at the age of 23 after the first surgery, that I may have the chance to go back to the Police Academy. After the second surgery, a few doctors have said that I would not be able to go back and become a Police Officer. Now I am trying to find that "job" that does not need physical lifting, etc. Any suggestions? As I have grown up in the Criminal Justice system and I like being a dispatcher, but it doesn't pay well.

thanks for everything.

Yogi

Brownie15 · 01-30-2003, 11:39 AM

Hi Yogi,

My name is Tammi. I can definitely relate to the problems you have been having.

I am 37 and have had neck and back pain since I was 18 years old. October 2001 it progressed to major migraines, pain and numbness in my right arm and leg, severe pain in my right shoulder and much more. I was diagnosed with Syringomyelia right away by the syrinx in my cervical spine. The Chiari took a bit longer to confirm as my tonsils hooked towards my spinal cord and weren't real apparent on the MRI.

I had the decompression surgery 5/28/02 and had two good months other than the surgery pain. Then all of my symptoms came back, the same as before my surgery. I am still working with the neurosurgeon in Long Island, NY for what the next step is. My syrinx is exactly the same as before surgery. I am not sure I want to go through the shunting, but I am not sure if my doctor supports shunting.

I also had to give up my career and very active life and am stuck in a limbo of where to go next. I am currently on disability and am making steps to deal with my pain. I'm sorry you are dealing with the same situation, but just know you are not alone.

If you would like to talk more let me know.

One day at a time,
Tammi

Peter Schaad · 02-18-2003, 10:05 PM

I have also been diagnosed with syringomyelia.I had cervical fusion to help with numbness in my left arm and hand.Surgery was a success. However i have degenerative disk disease in my whole spine and that seemed to trigger lowerback problems.I now find myself in limbo I lost my job when I was unable to return to work I am possibly going for lower back fusion.Now the syrnex is getting bigger.(my surgeon feels syrnex is due to trauma I was rearended @3 years ago)Can any one recomend a good book that gives more detail on how to live with the disease Trial and error is painful and I am being forced to give up my active life style. I am still waiting for a hearing from ss dbl.I am running out of resources. I have been accepted into vesid for retraining but have not leveled off enough that they will let me start taking classes. Any insights will be appreciated. I am sorry if my thought are a little disorganized I am so excited and hopeful to finally find out more about my disorder thanks Pete

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Pete

plymouth · 02-19-2003, 04:39 PM

Quote:

Originally posted by yogididdy:
In March of 2001, I was diagnosed with Arnold's Chiari. A birth defect when the 2 prongs on the cerebellum grow on top of the spinal cord. Normally there is a gap in between the prongs and the spinal cord.

Hi,

I became interested in Chiara a year or so ago when I met someone who was cured of it from st. john method neuromuscular therapy. As I understand Chiari II and III are birth defects but Chiari I (adult onset Chiari) is of unknown cause but can result from trauma such as a car accident and occasionally resolves on its own.

I have never seen it described as a "growth".

The St. John therapists suspect that Chiari I results from loss of proper spinal curves causing the spinal cord to traction the cerebellum down into the foramen magnum where it competes for space with spinal cord. The symptoms result from compression of the spinal cord by the cerebellum.

Anyone diagnosed with Chiari I might want to try this therapy before proceeding with surgery.

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~p

dchc OI · 02-21-2003, 01:04 AM

Hmmm.... My goal is not to scare you, but I'm almost 21 and know around 7 girls under 30 who've had this same surgery. Did you go to Dr. Milhorat? Every single one of the girls have had up to 5 repair surgeries. It's theorized that around 1% of children affected with CFS have a Chiari Malformation.